Newbie ???

[wapuska]

Hi all. So here is my situation. I am 36. I had thyroid ca in 2000 got rid of it with 2 bouts of RAI and 2 years year started experiencing some minor tolerable joint pain. A couple weeks ago that joint pain became intolerable. Blood work for an ANA and RF at that time was negative. When the pain got to be bad I called my Doc I asked her to redo the test this time the ANA came back postive with a homogenus and speckled pattern, the reflex cascaded to a postive SSB antibody. I have dry eyes, a dry mouth some of the time, issues with my voice from the thyroid surgery that at times get worse, brain fog that causes me to close my eyes and think about what I am saying and lately fatigue that is making me extremely angry since I am not used to the DRAG that comes with it. Through it all, the pain and fatique are the worst of it. Does this sound familiar to anyone else? I see a Rheumie in Nov when my insurance kicks in. Its all so frusterating and I am educating my self... anyone else have simiular stories??

[eyeamdry]

Hi wapuska-

It's late at night and sometimes the board gets slower on weekends so I thought I'd say hi and welcome to Sjogrens World.  You are in the right place and can probably learn more than you can from your doctor.  Of course, you still need your doctor(s), but we have a very knowledgable forum here.  I should say frienly too.  We are a good venting place. 

To me, your story could be one like any of the others, and still different.  Often there are more than one disease involved and usually not discovered at the same time.  The fact that you are diagnosed and seeing a rheumy soon is a good thing.  You'll have time to think of questions you want to ask.  Very good idea to hone it down to maybe 2 or 3 of your biggest problems.  Rheumys can be difficult people.  I have a great one, but others not so lucky.  Part of the problems is we want ALL at once and it doesn't work this way. 

I am heading off to bed now.  You'll have more posts tomorrow and after the weekend.  Good luck, Lucy

[Meld256]

Hi wapuska,

Let me Welcome you to Sjogren's World!   

As Lucy was so kind to point out, weekend nights can be a bit slow around here on occasion. We have members in many countries, so you can usually find someone 24/7.  I'm sorry you're having these problems, and yes, many of us can relate to your frustration.  I can relate to the pain and debilitating fatigue, and foggy brain.  I can also tell you that your life can improve with treatment and ways to cope.
We each have our own story, but many things are sometimes similar: having different health problems for years, being dismissed by doctors who don't see these as related, sometimes not being understood by friends and family.

I can also tell you this is a great place for information, understanding, encourage and support.  We ask questions of one another, vent, laugh together and cry together.  I think you'll find this site a welcoming and caring place full of friendly and helpful people.
I hope you can get more answers from the rheumatologist appt. in Nov. In the meantime, feel free to ask anything here.  We'll be happy to try to help.

Again, welcome and we look forward to hearing more from you. 
Melinda

[Joe S.]

Welcome wapuska. I will suggest that you read "Spoon Theory" and Pain Management.

Find the management path that works for you.

[Scottietottie]

Hi Wapuska 

Welcome to Sjogren's world. I'm no medic - but the positive SSB plus the symptoms would certainly seem to indicate Sjogren's.

Prepare for your rheumy appointment in November by keeping a symptoms diary and also making a list of questions for when you see them. It's so easy to forget something on the actual day!

I hope you find this forum useful. You will certainly find that it's friendly and supportive.

Take care - Scottie 

[Pisces24]

Welcome to the group!
Yes it does sound like Sjogrens. We've learned that autoimmune likes to travel in packs so you having a previous thyroid problem didn't surprise us a bit.  We don't pay attention to the minor symptoms (just live w/em) until they either build up too bad or the dr says "this ain't normal!".  You could have had this for years prior.

A daily symptom diary is a great idea!  After being diagnosed with Sjogrens, (took 6 yrs) I started to think back in time of al the stuff that came up and it started to add up.   I was diagnosed through blood work. My ANA, SS-A and SS-b are soooo durn high there was not doubt.   It is odd how it 'Kicks in". I figure mine kicked in about 2000 as I started having lots of teeth cavities (I had 5 my whole life prior to this.), numerous hard to get rid of sinus and throat infections, and acc to my dr: my blood work got all weird.

We've learned to be proactive with our doctors = i guess due to all the cr** we had to put up with from the duh? drs prior to diagnosis. Once the reality and acceptance sets in, you will be able to take an active part in your healthcare.  write out a list of questions you might have to take to the appt. I've often wondered if it is ok to take a tape recorder in to record all what the dr says. I don't have an advocate or anyone to come with me to my appts but either might be a good idea for you to remember all the info. Also but sure to ask about any meds prescribed, the allergic reactions and side effects. Sometimes the meds can cause the problems.

Good luck and be sure to let us know how things go.

[Carolina]

Welcome wapuska!

If this forum is helpful to you, welcome, jump right in.

I don't have a diagnosis of Sjogren's, but 'enjoy' many of the conditions that are part of Sjogren's.

You will find what you need here, just ask for it.

Hugs,

Elaine

[Patze]

Hi Wapuska,

Let me also welcome you to the SJS World and family!  Please look around the board as you'll find tons of topics and gaggles of information available by using the search engine located in the upper right hand side of the page.

I understand having to think about what you're going to say before you do, and its so frustrating!  Sometimes I feel as though I'm trying to speak a foreign language, and having to think about what I' going to say before I actually do (oh boy, especially at the office!   ).

When my journey stated, it was because of my thyroid as well.  I didn't have thyroid cancer, but I was hypothyroid with all the classical symptoms and could not get the GP to "diagnose" to save my life (it was not pretty).  Anyway, finally wound up seeing an endo and found my way here.

Again, welcome, and I hope that you'll find us as informative and welcoming as I did all those years ago.

Take care of yourself -

Patze

[Bucky]

Hi wapuska - welcome!

We're a forum made up of people from literally all over the world . . .  young, old and everywhere in-between.   

As the others have mentioned, there is a wealth of information here.  One could spend weeks and weeks here reading and only skim the surface.

When you are reading posts here, don't be alarmed at some of the things you read.  Sjogren's is such an individual disease - it affects each of us differently.  Some people have an intolerance to medicines.  Some have more involvement with Sjogren's than others.  Some have sudden onset symptoms, while others have had odd symptoms for years. 

I also wanted to mention to you about our "other" board - the Social board.  There we share any non-Sjogren's related stuff . . . like recipes, crafts, birthdays and other celebrations, vacations, gardens, etc.

We also have "live chat" several times a week where you can talk with others who have Sjogren's.

Again, welcome.

Bucky

[susanep]

Welcome wapuska, and I know you will get answers to your questions, and find out what will help you to feel more comfortable. God Bless

susanep 

[wapuska]

Nice to meet you all! Thanks so much for the replies! I have been keeping a good track on things and have started to blog some stuff. I think my pregnancy brought about a lot of this as well. When I had my son crazy things happened with the spinal and I nearly died. My blood pressure plummeted, I had to be put on O2, I couldn't breath they called it something I had never heard of before. The Numbing Doc lectured me about what I should have told him but I simply told him I never had a baby before let alone a spinal so how was I to know. The joint pain started after my pregnancy. Things started coming to a head over a couple of weeks and its was like I woke up to something that went from being tolerable and managable with a couple of Tylenol to something that has me taking tramadol and naproxen, has my jaws hurting (sometimes one side, then the other or both) and rarely affects my lower body. I was so relieved when I had the cascading reflex. 2 of my father's 4 girls have Lupus. I thought I might make the 3rd. I was also  dx with Hashimotos with the Thyroid Ca back in 2000 and had a total thyroidectomy with that. What a wonderful place to come and browse and know you are far from alone in the world. -Tina

[gold55]

Hi Wapuska, I'm so new at this and still waiting for a definite diagnosis.....my rheumie just remarked "rheumatoid with Sjogrens" and my foot xrays both came back osteoarthritis in the big toe joints with no joint damage to any other areas of the foot.  So, I expect to possibly hear something different when I see a second opinion rheumatologist in November.....it seems like forever to get into see one!  So until then I will learn from you and others here at the forum.  There have been several links posted with very good articles that I have enjoyed recently.  Hope you are on your way to getting better each day.